Power of Support During Cancer
- Grammy-winning artist Jon Batiste, 37, and his wife Suleika Jaouad, 35, a journalist and best-selling author, document their love story in the Netflix production “American Symphony.” The film captures Batiste’s career rise and Grammy nominations while also supporting his wife, who is living with acute myeloid leukemia (AML) and myelodysplastic syndrome (MDS).
- Acute myeloid leukemia is a fast-growing blood cancer that begins in the bone marrow, the factory that makes white and red blood cells and platelets. AML symptoms may include fatigue, loss of appetite, flu-like symptoms, and fever.
- AML treatment may include intense chemotherapy and a stem cell transplant, which gives the patient healthy cells to replace the ones that chemotherapy may have killed.
- Myelodysplastic syndrome is a variety of bone marrow disorders that look similar. Under a microscope, the bone marrow cells look like cancer and, genetically, may have alterations that are known to cause MDS.
- Symptoms of MDS include frequent infections, fatigue, shortness of breath (anemia), or easy bleeding/bruising. These symptoms result from the bone marrow being unable to produce enough healthy, functional blood cells.
Grammy-winning artist Jon Batiste, 37, and his wife Suleika Jaouad’s loving relationship was captured in the Netflix documentary “American Symphony.” A focal point of their journey to marriage is Jaouad’s years-long battle with acute myeloid leukemia (AML) and myelodysplastic syndrome (MDS).
AML is a rare cancer affecting the bone marrow, which is the tissue inside your bones. It’s caused by DNA damage to the cells in the bone marrow that give rise to blood cells. Red blood cells carry oxygen to tissues, white blood cells fight infections as part of the immune system, and platelets help stop bleeding. Those cells are damaged in AML, resulting in an overproduction of unnecessary white blood cells.
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The initial purpose of the documentary was to chronicle Batiste’s journey to success, which includes serving as the band leader on the “Late Night” show and composing songs with the likes of Stevie Wonder and Ed Sheeran. Jaouad, 35, told their documentarian that she didn’t want to play a significant role in the documentary mainly because of her diagnosis. Her career also thrived, as she was a best-selling author and journalist in her own right.
“She definitely didn’t want to be the sick antidote to Jon’s success, and nor did I [want that]. I wanted to make sure that she was a fully formed artist and individual, in addition to being Jon’s partner,” Matthew Heineman said to Vanity Fair. Heineman is the documentarian and filmmaker behind “American Symphony.”
When the couple met as teenagers, Jaouad was dealing with her first run-in with leukemia. She detailed what it was like growing up with leukemia in her memoir “Between Two Kingdoms.”
Her diagnosis intersected with her husband’s success, most notably in November 2021. At the time, Batiste learned he was nominated for 11 Grammys. However, the same day, Jaouad was beginning chemotherapy treatments for her second bout with leukemia. At this point in their story, Batiste said, “Life intervened.”
Accepting her diagnosis with AML will be linked to her husband, she opened up to the idea of detailing what it’s like for someone living with cancer while trying to be a supportive spouse. Meanwhile, Batiste always prioritized his wife’s health amid his career pursuits.
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“Too often, we see a glossed-over version of the illness narrative that ends in a cure, a sense of triumph, where you return from that experience wiser and stronger and braver. A relapse is every cancer patient’s worst nightmare. This time around, I knew that my prognosis was not in my favor. That felt, to me, worthy of portraying from the trenches of treatment,” Jaouad explained.
“A lot of documentaries, especially with entertainers, there’s a lack of vulnerability. But the goal was to make something that would be very true to life. And life at that time happened to be Suleika having this seismic diagnosis and me having these seismic career milestones,” Batiste said.
Jaouad managed to reach remission after treatment, but she will likely need to undergo chemotherapy periodically for the remainder of her life.
Helping Patients With Their MDS Journey
Understanding Acute Myeloid Leukemia (AML) & Its Treatment
Acute myeloid leukemia is a fast-growing blood cancer that begins in the bone marrow, the factory that makes white and red blood cells and platelets.
Within the bone marrow are stem cells that eventually develop into white blood cells (WBCs), red blood cells (RBCs), and platelets, which help blood clot.
Stem cells can copy themselves to make progenitor cells or precursor cells. Myeloid progenitor cells turn into red blood cells, granulocytes (a type of white blood cell), and platelets. AML affects the myeloid progenitor cells during a stage of development when they are called myeloblasts.
With AML, myeloblasts fail to turn into fully developed blood cells, leaving them to build up in the bone marrow and blood.
WATCH: An AML Diagnosis What are the Next Steps?
AML is diagnosed by extracting samples of liquid bone marrow and a chip of bone from the back of the hip. The samples are then tested to determine if blood cells in the bone marrow are abnormal.
Dr. Gail Roboz, an AML expert and medical oncologist at Weill Cornell Medicine, says, “The majority of patients have this sporadically out of the clear blue sky.”
Symptoms for acute myeloid leukemia can include:
- Flu-like symptoms
- Fatigue
- Fever
- Loss of appetite
AML causes certain symptoms, but having these symptoms doesn’t necessarily mean you have AML. Your doctor will do diagnostic tests to confirm whether or not you have AML before recommending a treatment.
Your doctor will then perform tests to diagnose you, and those tests include:
- Blood tests. In people with AML, white blood cell counts may be high, and red blood cell and platelet counts may be low. These tests can also show immature cells in the blood that should only be found in the bone marrow.
- Bone marrow biopsy. Removing and testing a bone marrow sample helps confirm AML after an abnormal blood test result.
- Lumbar puncture. This test uses a sample of spinal fluid to diagnose AML.
- Molecular and genetic testing. Your doctor can do tests to determine whether you have certain genes related to AML and if your cancer might respond to specialized treatments.
WATCH: Treatment decisions for AML
For people deemed healthy enough, induction therapy is the standard treatment for AML. The process involves a seven-day chemotherapy regimen, followed by several weeks of recovery. The goal of this high dose of chemo is to induce remission.
A stem cell transplant is another option for treating AML, as Winsor opted to pursue. After a high dose of chemotherapy, a stem cell transplant gives the patient healthy cells to replace the ones that chemotherapy may have killed.
After chemo and a transplant, the recovery process can be difficult because the immune system will be compromised. Finding a genetic match in a donor may also be difficult.
Understanding Myelodysplastic Syndrome and How It’s Treated
Myelodysplastic syndrome is a variety of bone marrow disorders that look like each other, meaning under a microscope, the bone marrow cells look like cancer and genetically may have alterations that are known to cause MDS. Common symptoms of MDS may include frequent infections, fatigue, shortness of breath (anemia), or easy bleeding/bruising. These symptoms occur because of the bone marrow’s inability to produce enough healthy, functional blood cells.
WATCH: Living with MDS
Some patients with MDS will have their cancer evolve into acute myelogenous leukemia (AML). Thus, your doctor needs to monitor your risk. They can monitor the risk by looking at your blood counts, the amount of cancer in the bone marrow, and any genetic abnormalities.
“For the workup of MDS, you start with a regular blood check, and you confirm that someone has low blood cells,” Dr. Jun Choi, a hematologist/oncologist at NYU Langone’s Perlmutter Cancer Center, tells SurvivorNet.
“And then, when the suspicion for MDS is high, the ultimate gold standard diagnostic test is a bone marrow biopsy. And that is because the bone marrow is where all the blood cells are made. And we want to confirm that there are abnormal cells in the bone marrow.”
A bone marrow biopsy can confirm MDS. It can also provide other details on your cancer.
WATCH: Treating MDS
Treating MDS
MDS patients’ treatment options depend on symptoms and the risk for it to evolve into AML.
For lower-risk MDS:
- Many people may only need to monitor blood counts every few months without specific treatment.
- Some people may be started on medications to stimulate RBC or platelet production.
- Some people may need a blood transfusion every few months.
- Specific types of MDS may benefit from lenalidomide (Revlimid), luspatercept (Reblozyl), or immunosuppressing medications.
For higher-risk MDS:
- Treatment usually starts with a class of drugs known as hypomethylating agents (HMAs). HMAs include intravenous or oral forms of azacitidine (Vidayza, Onureg) or decitabine (Dacogen, Inqovi).
- Other treatments are possible depending on the presence of certain mutations or if the disease is more aggressive.
- Some patients may require more frequent transfusions, from every few weeks to even several times a week.
- Some patients may be eligible for a bone marrow transplant.
- Many patients should consider enrolling in a clinical trial if available.
“The only curative option [for] MDS these days is a bone marrow transplant,” Dr. Choi says.
“Now, bone marrow transplant is one of the more intense therapies for MDS, so you really want to be able to tolerate this therapy. That is why this therapy is reserved mostly for younger patients and [those] who do not have other medical conditions,” Dr. Choi adds.
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